A better way to finish life

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As she does all day, every day, Amber lies on her mattress in front of the television watching "Sesame Street." Once in a while the voices distract her from her beloved Elmo. She rolls her eyes to look at the ring of faces above.Two nurses, a social worker and a doctor have come to visit.Her parents, Tom and Lisa Kimlinger of Fridley, Minn., are among the fortunate few parents of very sick children who have been getting expert help navigating the labyrinth of medical care available to their daughter. They've learned, often the hard way, that less can be better.So the days of constant visits to doctors in hospitals for ever-more-complex medical procedures are over, said Lisa Kimlinger, 46. "It's not worth the quality of life. I want her to be happy in the days she has left."Amber, 11, was born with an exceptionally rare genetic bone disease. She is 30 inches long and has never walked. Now, as she labors to breathe, her parents don't talk about what will help her live longer. They talk only about the kind of medicine that, like Elmo, will make her feel better today.This is the emerging specialty of palliative care, which is revolutionizing how chronically ill patients are treated, and focusing scrutiny on whether doctors and hospitals should be paid differently.American health care has been driven by a culture of "more is better." More tests. More treatments. More technology. This has created a medical system that succeeds brilliantly at paying doctors and hospitals to do myriad procedures to cure illness and prolong life at any cost.But it often fails to improve the quality of life and ease pain for the sickest and most expensive patients of all.America is now facing a health care tsunami of its own creation: An aging population that will die very slowly from astronomically expensive chronic illnesses.The prospect of that financial disaster coincides with a growing realization that doing more is not always in the patient's best interest. Sometimes the way to improve care and reduce often-futile medical treatments is to educate patients and their families about their choices and let them choose. Often they choose less.Experts estimate if that kind of patient-driven medicine were practiced across the spectrum, it could reduce the nation's $2 trillion health care bill by about a third.American health care has become an arena of specialists using a sophisticated arsenal of medical technology to battle diseases. Cardiologists for heart disease. Nephrologists for kidneys. Oncologists for cancer."It has substantially improved our ability to prolong life in the context of what used to be fatal illnesses," said Dr. Diane Meier, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine in New York. "We've turned them into chronic diseases." The medical culture is driven by a typically American faith that with enough technology and research, any problem can be solved. "There is this childlike belief that death itself can be defeated," Meier said. Today, "we can prolong the dying process for a very long time. And we do that."Doctors are trained to treat. They are trained to believe that death is the enemy, said Dr. Penny Wheeler, chief clinical officer for Allina Hospitals & Clinics. Years ago as a medical resident, she had to advocate chemotherapy for patients clearly at the end of their lives. "It was a horrible thing to do," she said. "I would be pushing chemo realizing that no one had talked to them about when to say when."The health care payment system has evolved in lockstep. Health plans pay doctors piecemeal rates to do procedures and conduct tests. Hospitals are paid to do surgeries, and provide beds and life support for critically ill patients. But general practitioners, geriatricians and psychiatrists -- doctors most likely to talk to patients and manage their care -- are paid the least of all.Meier said that her employer receives about $90 when she spends an hour and a half guiding an emotionally fraught family through the options for a loved one in intensive care. In the same time period her husband, a cardiologist, could earn $4,000 putting in heart stents to open clogged arteries.Not surprisingly, say researchers at Dartmouth Medical School in New Hampshire, this has fostered an over-supply of specialists and hospitals. As a result, a third of all Medicare money is spent on people with chronic illnesses in the last two years of their lives.Palliative care emerged in the mid-1990s and the growth has been explosive. Last year the American Medical Association declared it a specialty. It is now offered by about 70 percent of large hospitals.Though often confused with end-of-life or hospice care, in which all curative treatment is withdrawn, palliative care is more about how to live with chronic disease. The focus is the patient and the family, and their life goals. "We design medical care around those goals," said Dr. Eric Anderson, medical director of Allina's palliative care program. "Patients and families love it."(Distributed by Scripps Howard News Service, www.scrippsnews.com.)